January 26, 2018

Dear BRITSpA members,

Title: Evaluating fatigue in Axial Spondyloarthropathy (AxSpA)

We are writing to tell you about a research study that you may be interested in. The study is being run

jointly by Warwick Medical School (Dr Kirstie Haywood), the Staffordshire Rheumatology Centre and

Keele University (Dr Jon Packham). Nathan Pearson is conducting the research as part of a PhD

fellowship funded by the National Ankylosing Spondylitis Society (NASS).

Patients with AxSpA and AS have identified fatigue as a major concern – but one that is poorly

understood and often poorly measured. In our previous work, we have developed a conceptual model of

what AxSpA-fatigue is, which has supported the developed of a patient co-constructed, patient-derived

AxSpA-fatigue specific questionnaire. The purpose of this study is to evaluate the quality of the new

fatigue questionnaire and evaluate how it performs in AxSpA. Your participation in this study will help

improve our understanding of fatigue and the performance of the new questionnaire.

The study is a longitudinal postal survey consisting of two field tests.

Field test 1 (FT1): a cross-sectional evaluation of the long-form AxSpA-fatigue specific questionnaire.

Study results will inform an evidence-based refinement of the questionnaire.

Field test 2 (FT2): a longitudinal evaluation of the newly refined short-form questionnaire, with completion

on three separate occasions: 1) baseline; 2) 3-months; and 3) 2-week re-test. Study results will provide

initial, robust psychometric evaluation of the questionnaires quality.

What do the patients have to do?

Patients will be invited to complete and return – by postage-paid return envelope – a questionnaire

package that contains several generic and disease-specific questionnaires (and health-transition

questions for FT2: 3-months and 2-week retest) alongside some demographic questions.

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We have tested the acceptability of the questionnaire package with our patient research partners who

reported average completion times (mean 33m; range 25-40m).

FT1: this is a single, cross-sectional completion only.

FT2: this is a longitudinal assessment – patients can opt in to whichever parts they wish to.

What do the research sites need to do?

We are applying for this study to be adopted by the NIHR CRN portfolio. We do not anticipate any issues

with adoption as previous elements of this research programme, funded by the same NASS grant, have

been CRN portfolio adopted.

Interested sites are invited to identify AxSpA patients (50-100 individuals per site, with plain film or MRI

evidence of AxSpA). Participating sites will be asked to make first contact with possible participants.

Sites will also need to add patient names to, and sign, a template cover letter. All other study-related

documents (questionnaire packages, patient-facing documents) will be printed, prepared and provided to

sites by Nathan Pearson. Postal costs will be covered by the study research budget and envelopes

provided to each site by the research team.

If some participants do not respond at baseline, sites will also be asked to send a post-card reminder to

participants at 2 weeks, and a full questionnaire package at 4 weeks. In FT2, we will send follow-up

documents and reminders from Warwick Medical School.

If you are interested in getting involved with the study, please contact Nathan Pearson via email at

n.pearson.1@warwick.ac.uk. We are currently looking recruit sites for the first field-test that will

contribute to a broad geographical spread. We also hope to identify additional sites in anticipation for the

second field test, which will require a larger sample.

With kind regards,

Nathan Pearson, Jon Packham, Jane Martindale and Kirstie Haywood

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